Archive for the ‘Chelation’ Category

I have attempted to write this explanation – about the MTHFR gene – for more than a year now, often surrendering because it just gets so complicated (see diagram on right – and that is a simplified version)!

However, almost daily now, I need to explain the testing and interventions that revolve around the MuthrF#$Ker gene, which produces an enzyme that can assist in the brain’s ability to process (among many other important body reactions) in patients with ASD.

So, here is my simplified version, which covers the important steps for our understanding about testing and treatment for autism:

1. Folate (natural), folic acid (synthetic), Folinic acid (active) and 5-methyl folate (active) are not exactly the same a form of Vitamin B9.

2. There are several reasons why the levels of the B9 might be reduced:• Reduced intake. Picky eaters and kids don’t usually savor green leafy vegetables or lentils.• Problems with internal state of health will affect availability. Synthetic folic acid must go through the liver, natural folate is metabolized through the intestines.• Antibodies that bind to, or block the active compound. This is why doctors check the Folate Receptor Antibody Test (FRAT). The presence of such inappropriate barriers implicates reduced activity, so administration of additional vitamin should help alleviate difficulties.• Any ‘weakness’ in the body’s inability to convert the vitamin – that includes the MTHFR gene that regulates the enzyme called methylene tetrahydrofolate reductase.

3. The most studied and concerning genetic variations are often designated as C677>T, A1298>C. Hieroglyphics aside, we inherit a ‘C‘ and an ‘A’ from each parent, and each deviation yields a less potent enzyme, so the implication is that giving the active forms of the vitamin can be beneficial. (Dr. Google, and many labs will report variations as pertains to the risk of hyperhomocysteinemia, a medical condition observed in approximately 5% of the general population, associated with an increased risk for many disorders.) For ASD, improved communication is the goal of treatment.

4. The supplements include L-methyl folate, available as a prescription under Deplin®. A web search of this product will often result in a call from parents, “My child doesn’t have schizophrenia or depression!” Marketing. Improved outlook is just one of the treatment outcomes. As noted previously, in ASD the aim is more efficient neural processing.

5. Another intervention is available as folinic acid (<1 mg dosages) and as the prescription, Leucovorin. An Internet inquiry may stimulate a call, such as, “My child doesn’t have cancer or get chemotherapy.” Different market. At a recent MedMaps.org conference, I asked two top researchers whether they prefer one or the other active form. Each doctor replied with the opposite answer. Availability and cost help determine choice, and sometimes we try both.

Conclusion
The various forms of folate appear to be safe, effective interventions that can address weaknesses in the area of oral-motor functioning in individuals with ASD. In practice, agitation is the principle side effect, and too much ‘stimming’ or aggression is reason for discontinuance.

The gene controlling MTHFR production is important, but not the only one affecting multiple enzymatic pathways that lead to successful data processing. We are already discovering other critical genetic steps (SOD, COMT, etc.) and there are thousands of other genetic crossroads that will improve our understanding and lead to successful interventions.

For our more advanced readers – please feel free to submit any corrections, etc. that you feel might be necessary.

This story is a total rip-off. The New York Times recently featured a worthwhile piece entitled, A Doctor’s Guide to a Good Appointment. In that vein, I couldn’t help but add my two cents worth of advice about how to make the best of a family’s first visit to a developmental specialist.

Finding a functional medicine specialist.
The opinion of a pediatric neurologist is a good start. But, time is of the essence and evaluations that involve months of waiting serve the patient poorly, because they represent needless delay. A trusted pediatrician can be a great help. Therapists’ views are important because they are independent observers who know the child more intimately.

However, if you still can’t put your finger on what’s wrong, and if you find that you have been going to a variety of specialists (e.g. GI, allergy, dermatologist. pulmonologist), maybe it is time to seek a modern medical viewpoint. When possible, ask other parents about their research and experience, but don’t forget that every child is unique, so this merely represents one piece of the puzzle. The most reliable web advice is to be found at the Medical Academy of Pediatric Special Needs clinician directory.

Before your visit:
Labs, X-rays, MRI’s, EEG’s, IEP’s, psychological reports, hospital records, and evaluations of all types are extremely helpful. It is understandable, however, that some parents may prefer a completely fresh, unbiased opinion, perhaps saving that data for a future visit.

At The Child Development Center, we find videos extremely valuable. Taking the time to produce a written history with your specific concerns often yields the most satisfying consultation.

On the day of:
It may be difficult to appreciate the anxiety that all family members experience in this situation, including the child. Another stranger. More tests. Overcoming fear may require social stories, bribery, a favorite food, electronic devices, or some other tested method.

Either a picture, list, or a bag of the present medications and supplements, streamlines the visit. Plus, any archive of past meds – what worked and what didn’t – can similarly improve the efficiency of the interview.

Perhaps it goes without saying, but be sure to bring along any familiar toys, blankets, etc., so that the doctor is able to observe the children and the parents can focus on the conversation. Whenever possible, a close family member or therapist will be a valuable addition to the team.

An open discussion with the practitioner is imperative. Even the tension caused by a family’s disagreement about whether there really is a problem, is important in making an accurate assessment and creating a useful treatment plan.

Back at Home:
Perhaps this is the most difficult part. Who should you believe? Have any of the previous treatments been particularly successful? Has the child reached some plateau where he/she seems stuck? What are the alternatives? Listen to your heart.

Having reached some degree of non-conventional intervention, there may be a desire to further micromanage. Can 2 functional medicine doctors perform better than one? Although parents who attempt this course may be correct, a mixture of protocols could delay improvement. Get started with one intervention at a time, and become comfortable that nothing is causing harm. Be clear about what skills you are targeting and document progress.

Not infrequently, the treatment can involve periods of increased aggression or even regression, due to the ‘die-off’ of harmful organisms, food restriction, arduous therapy sessions, even new-found skills and sensory overload. Close contact with the practitioner (via email, phone, follow-up visits) is a must at this juncture, if the treatment plan is to be followed and successfully implemented.

Conclusion
All of the points in the ‘real’ Times article are well-taken and valuable in this instance, as well. Hopefully, this advice will serve to make the experience of taking the next step in your child’s journey even more productive.

I’m not a big fan of posting patient testimonials. Miracle treatments are frequently reported as gospel. Plus, it’s pretty unlikely that any practitioner would advertise negative information about their own organization.

On the other hand, many Googlers, my wife included, view such information as valuable insight into how the doctor practices. Readers may gain confidence that a visit could be a worthwhile pursuit. Here is a sample (all names are fictional) of this year’s correspondence at The Child Development Center:

EducationHi Doc!I think you would love to know we had the meeting to move him to regular class and he attended in person, answered the questions and explained his reasons to change his placement and was successfully assigned to his new schedule of classes beginning after the winter break. He also picked his electives.. I couldn’t believe my ears and eyes.I’m so thankful to your guidance as I don’t think you can imagine because you gave our family our child back and this is a priceless gift to a mom. May God bless you in all the ways possible as you honor Him in your practice. Alfie is doing great at school… and behavior is improving a lot. We are pushing for regular classes, since he has shown more abilities than the classmates… We had an appointment with the Developmental Pediatrician and he said that Alfie needs medication, which we are not going to do.

FeedingNo evidence of lead toxicity from Billy’s tendency to eat things [pica]…And, good iron level!
Please share with Dr. Udell. How do you tell if a child is deficient in folic acid? Have you done this test in Genesis?
<Anti-folate antibodies and MTHFR gene analysis. And, yes we did check.> Hi. I’m running low on glutathione. Is this one OK to order?
<No. Please order the one that we suggest.>

Glutathione and Methyl B12 injectionsSince starting 5 days ago, he is still requiring some prompting to communicate, but he is already starting to accept ‘no’ more… The therapist also noted that he is asking for things independently without prompts. So there is definitely progress being made. I can also tell his speech is continuing to improve… Thanks again for all of your wonderful guidance. It’s a true blessing to see Derek making strides after a rough patch!I have been giving Goldie the b-12 shots 3/ week for 3 weeks now and she is trying to talk more… Should we give something to help with focus?

Aggression Jim has calmed down and the tics are gone in the last 2-3 days. Meltdowns have stopped completely… Still worried about repetition and comprehension… Focus not there. Just to let you know that after we increased the dose of Sonic (cholesterol), Sammy is doing so much better!! Talking even more, more common sense! Asking a lot of questions! It’s amazing! We just started the 5-HTP and her behavior has improved… not hitting (still crying and throwing, though)…

Speech Sean is doing great, he is speaking and singing more spontaneously… some days more clarity than others… He’s been interacting more with baby sister and his peers.. appears more present. Bowel movements have been great…Still lining up and visual stimming… We just celebrated his birthday and for the first time he sang happy birthday and it was clear! I have attached a video… I’ve already noticed Bobby’s using longer sentences and more descriptive words since putting her on the probiotic/turmeric!

Socialization Billie is doing great, she has above average speech and comprehension. She plays well around and with others, now. She does seem to be fixated on physical appearance… very literal… doesn’t understand sarcasm… unempathetic but rapidly improving with every teaching opportunity… some clumsiness and weak core tone, rigid routines, but improved fine and gross motor skills. Her oppositional behaviors have decreased to be considered age appropriate… Shaquel is doing great, he is speaking and singing more spontaneously and his speech is usually much more clear… Behavior is good… he has been interacting more with baby sister and his peers in school. He also appears more present and has started smiling and saying ‘cheese’ for the camera! Bowel movements have been good… still visual stims and teeth grinding, but improved in last few weeks… We just celebrated his birthday and for the first time he sang Happy Birthday and it was clear! I have attached a video…

Naltrexone The Low Dose Naltrexone has been amazing. The day before we tried it, I read an article in which a mother said that her child stopped his self-stimulatory behavior 3 hours after applying the first dose of LDN. We had the same experience. The only “stim” Manny really had was that he would put objects up to his eyes and look at them closely. We’re not sure whether it was an actual stim, or whether it is related to his exotropia. In any event, we rubbed the cream on Manny’s wrist, and literally the next morning (after 1 dose), he completely stopped bringing objects to his eyes and he has been so much calmer. Also, his exotropia has decreased what seems to be tenfold since beginning the LDN. All his therapies noted that his progress since the LDN had been through the roof. Thank you for prescribing this medication. It feels like a miracle medication.

Metabolism & Medications The Intuniv as you originally prescribed… has Haley completely stopped stimming, but also lethargic… We are going to proceed with your instructions to alter dosage and timing. Correct?Robin completed his third round of Vancomycin over two weeks ago. The Vancomycin seems to keep him calmer and more focused. Since stopping the Vanc, his inappropriate laughing has increased quite a bit. It’s affecting his school work… After two weeks for the new supplement plan for Jon, he shows the the following-Sleeping hours at night increases from 9-10 up 11-12 hours, High level of language, Less hyper, Mouth stemming only with the salvia… This is regarding Jet’s progress on his new medication. I am glad to report that he is more focused, doesn’t stim, follows instructions and is more aware of his surrounding. This is really great… We are happy for the progress in calmness but torn with the emotional side effects. Is there something else we can try to still have him focused with less side effects?

Development Wanted to mention that for the past 4 weeks, Harrison has been full-time in a Gen Ed classroom and has been successful. He has been placed in an advanced reading group as well and gets good grades. 🤗 We are extremely happy and owe it to Dr Udell and his wonderful staff. Harry works very hard to please everyone as best he can although sometimes his anxiety gets in the way… Of course, some accommodations are made for him such as visual reminders but eventually, they plan on fading those out probably next year in second grade. He will still receive speech therapy in school as well as sensory breaks. I am looking for a new BCBA for the Summer… Thank you a million times! I still can’t believe this success. Also, his brother Lucas has improved dramatically in academics and sports! I’m usually writing to ask for help but I wanted to send you proof that things are in fact finally coming along again… This is Gary’s very first picture drawing people. When we first met with Dr. Uddell nearly 4 months ago, he asked Gary to draw a picture and it was so immature I nearly cried. He never wanted to draw a picture bc his fine motor skills were so far behind; but he showed this to me today from day 2 in VPK. He’s behaving wonderfully so far in a normal classroom with an ABA therapist by his side for reinforcement. His speech is noticeably improving, his fine motors are improving, and his temperament is so much more manageable. He’s a true gem. Thank you all for helping us get there. I brag on your office and staff regularly.
Dr. Udell, for your record, I think I know some of what Gary’s body is detoxing. My levels came back high… I’m now working to reduce all of those for the whole house and I see a visible difference.. Your hard work and professionalism means a lot to us. Thanks for helping my son and our family!!!

Awareness When I came to you, our little girl was just 15 months and we were both unaware of everything that was to come with her ASD diagnosis. I went to you for the hope that maybe it wasn’t ASD, but something else. You made me “aware” that allure behaviors and presentation was indeed ASD and gave me the tools and hope to keep fighting towards her progress and development. With that awareness came courage to accept her diagnosis but not her trajectory (as most conventional pediatricians would just tell me, nothing will help, this is incurable). You helped me roll up my sleeves and continue finding new ways to help her both biomedical and therapy-wise. She was “unaware” for about 1 year during which I saw much regression and not much forward progression, but tried everything you recommended. True awareness came one day when she cried for me not being home… then when I started a new job, she said she wanted mommy to be home with her and not at work… and shortly after she said, “I love you” for the first time and asked to whisper something in my ear. She is aware! She’s back with me in this world and not just in her own. We still have some gaps to bridge with her development and behaviors but being “aware” for both caregivers and child is half the battle. I applaud you for being an amazing and true advocate for autism awareness in more ways than one. We are blessed to have you in our lives!

Sleep We are having a heck of a time trying to get Sara to drink her juice lately. She tastes everything. She has been off the intuniv for 3 days now and is manic!! Only sleeping 4 hours per night… no one has slept in about 4 days and she is disrupting the whole house. Stims have increased. She is happier and not tired that’s for sure. Anxiety is gone, too. She is talking A LOT… constantly like before but it’s more meaningful, not just scripting. Please let me know where to go from here. Geri has been sleeping well so I will continue with the nystatin 3 times per day for a month,
as you suggested…His sleep is far better than before! Rarely, does he wake up in the middle of the night after a bad dream! But he does fall asleep immediately.. on an average, he gets 9 hours of sleep daily! His speech is better than before.. he has more number of words… Understanding is also better now! I have also started LDN from the past two months! His mood and sleep is much better!

Sensory increased Pat up to 1/2 tablet yesterday. We saw increased stimming and auditory sensitivity but these were the first school/behavioral therapy days that were NOT compromised by multiple tantrums in 6 months. Work actually got done. Personally, I can live with increased stimming and sensory overload if Pat can work happily without tantrums.

Yeast Howard finished the 8 week course of diflucan. His ABA therapist and mom/dad have noted improvements in attention span, decreased episodes of tantrums, elimination of physical aggression. We are still having problems with verbal language. It seems to be the biggest hurdle of all… His capacity to follow directions has also improved… progress with potty training… Thank you for helping us. I have reduced glutathione, and have stopped the B12 for this week. Started him on fluconazole. I see a change in his speech. It is much better. And, more focus and eye contact, too.From our Practice Manager, Karen Vossen: You can ask me or Ashly anything. If we don’t know we will pass it to Dr. Udell. Oregano oil would be fine to try also grapefruit seed extract and more natural anti-fungals. Probiotics help keep fungus down. I will forward to Dr. Udell for anything else he might suggest. You can also email him anytime, too

Poop – Lots of pictures of stools to greet me each morning! Rashes, as well. Good day – as per your request earlier today here is a picture of Liam’s poop
(it does not float) the poop stinks. Please check out the attached picture. Over the past few weeks… gritty bowel movements…
He basically eats … Do you have any thoughts on this? The school nurse asked me to pick him up from school today because he had a rash on his
face upper chest and upper back. Meryl has a bumpy red rash all over her arms and on top of her palms. The rash is continued under buttocks to below her knees. It almost looks like red goose bumps… At first I thought she may have eaten something she was allergic to… Will this rash diminish on its own? He also has this rash on the inside of his arm. Not sure if it could be linked to all this or not but i’ve never seen this on him before and he’s had this about a week. The motrin seems to make it go down a bit and it flares worse when the motrin wears off.

Guidance & Communication I am interested in scheduling an evaluation with you for my 5 year old daughter. I follow you on FB and am very interested in your philosophy and understanding of the pandemic in this country of ASD. I am an RN and my husband a physician and we have never completely bought into the whole “genetic” causation… I have yet to have a pediatrician agree with anything that throws vaccinations under the bus or connects them in any way to ASD. (and let me clear, I am not an anti-vaxxer)… I would like to know what kind of testing you do and if you and I are on the same wavelength as far as philosophy goes. I’ve been very disappointed thus far by the medical community in their knowledge, approach and desire to dig deeper than just a psychoevaluation. To date my daughter has never had a medical work up to ensure his symptoms are not being caused by something other than a DSM-9 code/label slapped on him by a pediatric neuro-psychologist. As you know it can be very costly to go from place to place so I would just like to know before scheduling if we are in the same stratosphere regarding approach. Thank you so much for taking the time to read this. I look forward to hearing from you. Rhianna and I really enjoyed the visit with Dr. Udell and everyone in the office – what an inspiring and empowering culture you foster! We look forward to working together with you going forward.Dr. Udell understands if you don’t want to do expensive lab tests so be sure to speak up or tell him you want to think about it… He is very easy to talk to. My son goes to him and we don’t do all the suggested lab work, we did it all a long time ago… Overall I don’t feel any pressure and I’m glad we have him to reach out to… His staff are all great too, any phone calls are followed up on.Sending you this email is not just gratifying but it is full of thanks and appreciation towards you and your team. In just about 3 weeks of our lab results and changing Raul’s diet thanks to the labs you requested , my wife and myself are deeply thankful towards you Dr. Udell , I don’t think this is just a coincidence but since we have changed his diet and casein free products i mean his improvements are seen through so many eyes that its not just us as parents. His grand parents , teachers , cousins have seen Raul as a smart fun kid to be around. Just a couple of nights ago he was playing TAG with his cousins. He went to a farm with his grand parents and other cousins , Raul usually wondered in open field , but not this time he stayed in the pack and did everything their cousins were doing , if they jumped he jumped, if they chased a chicken he chased the chicken i mean even the grandmother was so amazed on his development it was just so amazing, not once he wondered around to another places , he stayed where every one was. My wife picked Raul from day school the other day and she did hide so he would not see her ( Raul has impressive eyesight, that’s why we try to hide just to see how he plays, he can spot us just as we enter the day school even if he is yards out or doing something else) Raul that day was in the middle of playground with his classmates and talking with them (in his language but he was in the middle with all his classmates, something that did not happen quite often. His teachers are amazed that his is doing everything they ask… he enjoys music , sings , dances and now paints . I don’t know what to say but this is just 3 weeks that passed and its something just such a great feeling that even my wife which is the most negative of both of us is all SMILES and enjoying her son. Thank you with all my heart Dr. Udell , thank you so much, we would never know about this if it wasn’t for you and your team. I could tell you so much more that happened during this 3 weeks that it would take you so much time to read, but really THANK YOU! You changed my son’s life and our families’ life and we just hope this is not a fluke and that this will just get better and better. Thanks for putting a smile to my wife and to my son. THANK YOU THANK YOU.. words are just not enough to thanks you ! Have a great weekend Dr. Udell. My family send you all our love ….

Conclusions
Of course, not all of our work results in the most positive of outcomes. There were many daily emails describing events that required additional interventions. However, by answering the calls and emails, and staying up-to-date with the science and the families, we continue to have an increasing number of children who experience improvement, if not complete resolution, of their childhood developmental challenges.

Many thanks to our amazing families, the patients,
and my wonderful, caring staff.

In the face of the exploding incidence of childhood developmental abnormalities, scientific knowledge is sorely lacking. These are my top picks for this year’s most useful human research and events that address our understanding about the cause(s) and treatment(s) of these conditions.

JanuaryDisrupted prediction errors index social deficits in autism spectrum disorder
This BRAIN study which locates “… coding discrepancies between the predicted and actual outcome of another’s decisions…” provides, “a novel insight into the neural substrates underlying autism spectrum disorder social symptom severity… could provide more targeted therapies to help ameliorate social deficits in autism spectrum disorder.”

April – Autism Awareness monthThe Pesticide Action Network and the Natural Resources Defense Council filed a complaint against the EPA, led by Trump appointee Scott Pruitt, asking a federal court to make the agency follow through on an Obama-era recommendation to ban chlorpyrifos, a pesticide linked to brain damage in children. The Trump administration reversed that recommendation last week — even though the EPA concluded in November that the pesticide is associated with autism, lowered intelligence, developmental delays, and attention deficit disorders.

SeptemberSome good publicity for Planet Autism.The Good Doctor, a TV show about an autistic professional appeared on ABC. Compared to Rain Man, it represents a quantum leap in the public perception of autism. Also, Julia, a muppet with autism, joined the cast of the popular PBS children’s show ‘Sesame Street’. Plus, debuting this year was Netflix’ new comedy about an autistic teen, Atypical. Finally, you may want to check out these two offerings: Keep the Change, a love story which challenges popular misconceptions about ASD, and the more serious Deej – inclusion shouldn’t be a lottery.

Conclusions
Another year of more questions than answers. Why does it seem to be taking so much time for useful human studies to appear? Dollars for basic research depend on funding agencies’ understanding of this enigmatic condition. Plus, it takes more than a billion dollars to develop any new medication, so ASD is a very risky proposition.

Then, there is the Bettleheim effect (he popularized the ‘refrigerator mom’ theory), the Wakefield effect (any new idea about autism becomes suspect), the vaccine effect (just talking about ASD leads to this controversy), and the continued debate about whether there even really IS an epidemic.

However, practically everyone, nowadays, knows some family that is touched by this developmental disorder. We must continue to hope that progress will accelerate in response to the reality of a condition that affects so many of our children

Why I’m really not worried A small, boutique practice, such as The Child Development Center, should hardly appear on any corporate radar screen. We have taken care of thousands of patients, while pharmaceutical companies can reach multiple millions utilizing propaganda and government access.

Planetary drug stores continue to fund and create new potentially harmful products. This grouping of functional physicians may just represent collateral damage.

Large drug companies possess the power to spread cancer in our collective being, death is but one eventuality. Considering Pharma’s great scientific strides, and enormous profits, someone ought to slip a ‘Fund for Diabetes Prevention Program’ message into the corporate suggestion box (paid for with some of the dough that insulin generates), rather than knock off a few holistic practitioners.

Any conspiracy talk is best minimized because the conversation usually devolves into a controversy regarding the childhood vaccination schedule. The Wakefield effect. More heat, less light.

The local news station reported, “Police: AZ father kills wife, toddler, baby, himself in weekend murder-suicide…Investigators believe the cause was financial issues. A co-worker… called police Friday after finding all four shot to death in a room.“

Conclusion I sincerely hope that these deaths are not part of some conspiracy. If it’s true, multinational drug companies are only shooting themselves in the foot, getting negative publicity that isn’t worth the effort. Pharmaceutical manufacturers are already entrapping us in a variety of ways.

So, I’m not getting a gun, or hiring a bodyguard. We’ve all got more substantial stuff to worry about, like getting kids with speech apraxia to talk.

Were it not for a lack of knowledge or, frankly, interest on the part of most of the medical community, parents of children with autism would be happy to relinquish their quest for appropriate treatment.

Too often, I listen to stories about pediatricians who have declared, “Well, I don’t know much about that ‘spectrum’ diagnosis. Let’s wait 3 to 6 months and see what develops.” Or neurologists who, after observing a patient for less than 5 minutes arrive at what they think is an accurate diagnosis, followed by little in the way of explanation, and even less effort to provide relief, other that a ticket to, “find a good therapist.” Then, there is the peanut gallery of mildly interested observers who implicate over-diagnosis and link the epidemic to anti-vaccination conspiracies.

That being said, the families who are left to fend for themselves in this void must navigate a sea of dangerous waters in order to find safe, reliable and effective protocols for children affected with ASD. These are some of the issues that frequently arise for those warrior-parents.

No matter how ‘benign’ the intervention, what works for one child might actually make another child worse. There are many different kinds of autism, including boys (aggressive) vs. girls, early vs. late (language regression), immune (rashes, constantly sick and antibiotics), gastrointestinal (reflux, bowel problems), and genetic variations. Furthermore, at any one point in time, speech apraxia, social isolation, sensory issues, or aggression might define a child’s autism. So, Dr. Google’s therapy du jour may not even apply to the present status of your offspring.

Will Junior actually take a supplement that was suggested on the Internet? Compliance issues are a major challenge among our patients at The Child Development Center. Children are usually very picky eaters, sometimes refusing to chew, or preferring to smell everything, and not likely to ingest another yucky concoction. The ‘best’ fish oil won’t work if your child won’t take it, so a better tasting, less expensive, well-tolerated version may be the better choice.

Costs can spiral out of control. Each affected child may take between 5 to 10 supplements/medications per day, often exceeding $300 per month. And, of course, it is not covered by health insurance. Can you really afford to give another remedy on the advice of a friend-of-a-friend-of-a-person-whose-kid-has-autism?

Complicated, expensive therapies are compelling. Parents who seek experimental, untested, and/or potentially dangerous regimens are not foolish or ignorant, they are frustrated and desperate. For the most part, unless your family has unlimited resources, your money is better spent on proven, conventional behavioral interventions.

Parents may not be aware whether item #2 on the list of supplements is actually amplifying item # 7, or nullifying. For example, notwithstanding manufacturers’ claims, digestive enzymes digest stuff. Probiotics, proteins, etc. work best when they reach their intended destination in the natural state, so some products must be given individually.

Home therapies do not take the place of a thorough medical workup by an experienced practitioner who demonstrates reproducible results. Vitamin D, e.g., is great, but high doses could be harmful. The child’s blood count, liver, kidneys, thyroid, and other metabolic functioning should be documented and followed when a fragile toddler is the recipient of pharmaceuticals of any kind, with potentially serious effects.

Conclusion
Rather than eschewing novel treatments, I am eager to become educated about patients’ reactions – positive and negative – so that my advice applies to each individual child, at a particular point in their recovery, targeted at the therapies that will take the patient to the next level toward independent function.

I have learned useful techniques from naturopathic, holistic, Ayurvedic, and just plain Mom-medicine. Epsom salt baths, attention to nutrition, probiotics, essential oils, and the like, can be quite helpful. However if you are experiencing a 2 year-old who is not making eye contact, a 3 year-old who doesn’t speak, or a 4 year-old who is banging her head, sooner or later you will get the most tangible results from a practitioner who can accurately identify, and treat, such serious challenges.

About regimens and treatments that some might say, “How can it hurt?” the most important lost resource may be time.

(Too) many years ago, our Regional Intensive Care Unit had the honor of hosting Audrey Hepburn. At that time, we were knee-deep in cocaine exposed babies, and the entourage stopped at the incubator of a 1 pound infant who was barely visible among the wires and tubes.

I asked the famous actress, 1992 recipient of The Presidential Medal of Freedom, and tireless worker for UNICEF, if she minded that the costs of this single child’s care were expected to exceed $1 million. “Wouldn’t you be able to feed an entire village somewhere?” Her surprising answer was, “There’s enough money for both, if we care to spend it that way.”

Fast forward to a recent NYC fundraiser for Columbia Presbyterian’s Transplant Initiative. I complained to my beautiful and patient wife, Jackie, that autism doesn’t receive the same kind of attention as other medical condtions. Frankly, I was jealous. There is enough money for both, if we choose to spend it that way.

There are presently ~117,000 people requiring an organ transplant of some type. There are over 5 million people with autism. In the past several years, I have attended, and been struck by, similar begrudging feelings at benefits for the Michael J Fox Foundation for Parkinson’s Disease. Sure, it’s important to give people a ‘second chance’ at life. But, have the children who are most affected with ASD, and their families, had any real first opportunity at normalcy?

Look, I’m not trying to compare apples to oranges, but it seems that ASD should be appropriately considered as THE childhood epidemic of OUR time. A great deal more is needed by way of funding for useful investigations. I am honored to serve as a Board Member in our local Autism Society of America – Broward County, but research and medical issues are for other institutions.

Autism is stuck in a century-old paradigm of psychological causation. Lately, parents are offered a genetic etiology that leaves them with little hope. Disparate theories and alternate interventions require evidence-based research. That includes adequate vaccine studies – among other ubiquitous toxins – to identify those infants at possible increased risk for untoward consequences.

Acknowledgement of the successes that doctors, such as myself, are experiencing every day, needs to be appropriately studied and documented. It seems that more funding might be directed toward our work, were it not for all of the controversies surrounding an autism label. Unity among the various interested parties to support ‘N of One‘ treatments may help us attain that goal. That way, more toddlers would have access to earlier medical interventions, as well as conventional therapy.

Columbia’s Transplant organization’s motto is “We don’t just practice medicine. We change it.” Practitioners who are at the forefront of effective autism diagnosis and treatment feel that way, as well.

Undoubtedly, the most stressful challenge that any family might face is illness in their child. Even in cases where treatment is established, e.g. acute leukemia, there are bound to be differences of opinion about which doctor, or hospital will do the best job.

When it comes to ASD however, even the diagnosis can remain in doubt. One parent, or a sibling, may have experienced “the same” symptoms, such as late speech or inattentiveness. So, the ‘watchful waiting’ advice from the pediatrician appears most prudent. A neurologist who observed your toddler for 70 seconds may have declared a normal – or dire – outcome. Who to believe? Then, there is the conventional medical community that continues to debate the condition and the ability of earlier recognition to alter the course.

Differences about the diagnosis Take an online questionnaire, such as the Autism Treatment Evaluation Checklist or Modified Autism Checklist for Toddlers. Although ‘experts’ may deem such surveying as ineffective, it is certainly a start. And, parents shouldn’t bother quibbling over whether Junior should get a “1” or “2” for any single answer. Observing suspicious tendencies may help convince a spouse, or doctor, that there could be real reason for concern.

Listen to the advice of grandma or grandpa. They have raised other children, even if it was a different century. Try not to listen to advisors who have no responsibility for their opinions.

If a therapist is already involved, ask what signs and symptoms they view as worrisome. It’s not their labels that you seek, but another professional opinion regarding suspect behavior.

Don’t be afraid to ask the child’s teacher, or the school personnel, what they think might be different about your child. Academic staff are frequently the first to postulate a problem.

Take videos of unusual behaviors. One parent may simply not have gotten to spend enough time to have observed a ‘stim’, or recognize activity as repetitive.

Have the child evaluated by a trained professional. Then, insist on a precise diagnosis. Children with sensory processing, executive functioning disorder, and speech apraxia have autism.

Discrepancies about the next stepsSo much inertia must be overcome to establish that first step, simply embracing traditional treatments can offer parents glimpses of improved development. OT (occupational therapy), PT (physical therapy), S&L (speech and language therapy), and ABA (behavioral therapies), must be given the time to reveal results.

At the very least, however, ask your pediatrician to make sure to perform some basic laboratory testing. Even if there is disagreement, how could it hurt to obtain a complete blood count, evaluation of nutritional status (calcium, magnesium, vitamin D, iron), and thyroid screening?

Opposition about biomedical interventions
Although the pull of the Internet is great, children are best served by contacting a physician who is involved in The Medical Academy of Pediatric Special Needs. Unfortunately, there are too few to adequately staff the burgeoning number of affected children, but, we practice state-of-the-art, evidence-based medical intervention.

By continuing our education within such a medical fellowship, and achieving a thorough knowledge of the science that appears in peer-reviewed journals, doctors have developed protocols that have been proven safe and effective. Although the costs are rarely adequately covered by medical insurance, the investment will last a lifetime. Literally.

Conclusion
Denial and delay are not in your child’s best interests. Doctors who are satisfied with the status quo will achieve that end. Modern thinking is that earlier intervention results in improved outcomes.

At The Child Development Center, our experienced and knowledgeable Practice Manager, Karen, has observed that families who seem to have the most success, “May not be on the same page, but are at least in the same book!”

Gastrointestinal issues are one of the most common co-morbidities in patients who experience signs and symptoms of ASD. Treatments have included prebiotics, probiotics, antioxidants, cathartics, detoxifying agents, antibiotics, antifungals, human fecal materials, and others. Singly, and in combination, they have resulted in sometimes limited success and frequent relapses.

Furthermore, patients with ASD suffer a variety of allergic and autoimmune conditions, including rheumatoid arthritis, food sensitivities, asthma, and eczema.

Filling that therapeutic void is the coming world of helminths. It is a unique form of gastrointestinal/allergy treatment, now being popularized by a highly respected pediatrician, Dr. Sidney Baker. At The Child Development Center and other Developmental Clinics, treatment with HDC is becoming an additional strategy for patients with autism.

What is helminth therapy?According to the NCBI, it is “The treatment of immune system diseases by deliberate infestation with helminths. This therapy is partly based on the HYGIENE HYPOTHESIS which states that the absence of parasites increases immune dysregulation because of the lack of stimulation of REGULATORY T-CELLS.”

As researched and reported early in this century in Science, “The induction of a robust anti-inflammatory regulatory network by persistent immune challenge offers a unifying explanation for the observed inverse association of many infections with allergic disorders.”

As unappealing as it may seem, the rat tapeworm, Hymenolepis diminuta cysticerci (HDC), is considered a mutualist, providing benefit to the host without causing longterm harm. Out-of-the-box thinking by a few functional medicine doctors has taken the following course:

Chronic illness is an expression of autoimmunityGut problems and allergy in autism are a form of chronic illness and autoimmunityHDC interferes with autoimmunityProvide HDC for chronic illness, including autism

The ProtocolIn our practice, an email is sent with the parent order form, directions explaining how to administer and store the HDC upon arrival, as well as some background information. I send a request and a summary of the medical history. After reading all of the information provided, the parents contact Dr. Baker, and the product is sent to the home.

How to take the product?
Patients take them by swallowing the supplied liquid (the organisms are barely visible), or adding it to another drink. The Primobiotics dose is 1-60 HDCs, given every 1-4 weeks. The usual plan is to start with a dose of five HDCs – fewer in young children. It may take up to 6 weeks to see positive indicators and six months to fully determine that it hasn’t helped. When found helpful, the length of treatment has yet to be determined.

What are the costs?
The costs (directly from the company) are $100 for 1–10, and an additional $25 for each additional 10. The maximum charge is $175 for 40 HDC. Above that there is no additional increase in charge. Shipping is usually $35-65 but for Western US and Canada, it may be $80-100.

What are the downsides?
Constipation should be taken care of before initiating the use of HDCs. There may be some digestive upset with mild abdominal discomfort and some changes in bowel movements. Hyperactivity or insomnia lasting for a day or two are experienced by less than half of recipients.

If, after the first dose there are no positive or negative effects, the dose is increased as the optimal dose is established. Some individuals may show indications that a dose is ‘too much’ – with a more robust digestive discomfort or hyperactivity/insomnia than is usually felt as part of the initial response, in which case the dose is reduced to the minimal number.

What if a worm doesn’t pass?
According to Dr. Baker, a worm ‘sticking’ is a rare and benign event that can be treated with a dose or two of appropriate medicine.

Discussion
Note that HDC is not an autism ‘cure’. Rather, it can be useful as a treatment for the myriad of co-morbid conditions that can cause signs and symptoms related to ASD. Perhaps that is why Dr. Baker reports a ~50% success rate, after recommending this therapy to nearly all of his chronically ill patients. “What’s the alternative?” he would ask.

Though he eschews fearlessness about his willingness to offer advice, Dr. Baker has assumed a significant amount of responsibility in this endeavor; from cultivating the critters, to teaching others how to breed them, to sending out his own ‘farm-fresh little dudes’. He has personally answered emails, and he even called one of our parents who had concerns.

Interested practitioners are working together to educate and gather experience, in order to optimize this intervention. Specific probiotics are indicated, as well as evaluating progress, and even examining unusual stools that document the gut ‘reset’. For many, the question will be, “What to discontinue first?”

Conclusion
Doctors who have assumed the challenge of treating patients with autism must remain open to all treatments, and recognize that it is the PATIENT who we are treating, not a specific disease. Some interventions, like GcMAF, were helpful, but are no longer available. Others, like antifungals and antioxidants, have taken time, and we’ve gotten pretty good.

Our patients have been satisfied with the service. Within a couple of months, two of five children have already shown positive responses, with improved behavior and communication. Treatment appears to be a safe, effective and reasonably priced way to assist patients with significant GI and / or allergic challenges.

As the autism epidemic has grown, so too, has the knowledge of professionals who shepherd treatment, and our recognition of success. It is helpful to offer predictive signs that reflect steady improvement. Due to the variations in autism presentation, there is no authoritative information about how long recovery takes.

However, it can be quite useful and encouraging for a parent to know that it is great news when a child who, after 9 months of treatment, is finally repeating words. It is just as important to understand that the lack of questions, or comprehension, is not pertinent at such a stage.

Patience is key – all affected families have already learned that virtue. But proper acknowledgement that the chid IS getting better should reassure families, hopefully adding a touch more perseverance to their storehouse of solutions.

The journey begins as the ‘fog’ lifts. Wandering should become exploration. New diagnoses do not suddenly ensue, they rise to the top of parental concerns.

It’s not apraxia AND autism. The lack of verbal communication ought to define that phase of autism. Speech arises as sounds, often verbal tics or ‘stims’, teeth-grinding, or screeching, progresses to occasional single words, more consistency, then more dependable expression.

At first, merely hearing the speech therapist say that your child is trying is a very positive sign. There is a pattern. Speak to yourself. Speak to toys. Speak to family. Sometimes, it make sense. Juice. Want juice. I want juice. Observe other children. Speak to safe children – older, younger, more docile. Sometimes, inappropriate.

The same arrangement can emerge with shorter, then longer, sentences. During this phase, parents may fear that the child doesn’t doesn’t comprehend, or is lazy. “He can do it if he wants to!” I think of it as paving newer, progressively wider, neural roadways. The quantum leaps in the appearance of knowledge, such as letters or numbers, are a result of the newfound ability to perform expressive language.

Repetition of words or phrases (echolalia, scripting) seems to be part of the fabric of the acquisition of this ‘skill’. If a child is supposed to say 1000 terms, e.g., and only has 300, they may say the same thing 3 times just to make up the difference, or repeat the last words that were spoken. (Neurotypical adults often do this, as well.)

Socialization will rarely ensue if these milestones, in some form, haven’t appeared.

Children who have repetitive behaviors and restricted interests do not develop obsessive-compulsive disorder. Yes, a youngster may appear to have OCD, but it’s the same problem they exhibited at 2 years of age. And, no pediatrician called it OCD back then. Furthermore, adult drugs for this ‘condition’ are dangerous and rarely perform as expected.

Sensory processing issues that involve hearing, vision, etc., do not develop intoSPD. They may become highlighted at various points in the child’s recovery process as the cause of distraction or aggression. Stimming is frequently a symptom. Occupational therapy and other appropriate neural interventions can be quite helpful.

Likewise, lack of attention and focus, overactivity, and distractibility aren’t really a newly acquired ADHDdiagnosis. This represents the remnants of an earlier autism. Signs and symptoms are only as subject to pharmacologic remedy as the resulting, appropriate anxiety.

Proper recognition of the challenging behaviors is key.
Does anyone know of a drug that would enable a 5 year-old to perform in a 2nd grade classroom?

Immaturity, tantrums, and difficult transitioning do not warrant a separate condition. Oppositional Defiance Disorder is a description. Behavioral interventions have proven value.

Conclusion
Some might be confused by my use of the word ‘recovery’. It depends on the definition. Subject to the age at the initiation of therapies (and a million other factors), The Child Development Center generally aims for a 3-to-6 year window, in order for a ‘typical’ patient to enter the general educational environment. There may be plenty of leftover challenging behaviors, as occurs in many of the other students in this century.

My point-of-view is that, 10 years after a crippling auto accident, the appearance of normalcy doesn’t erase the prior event. Five years following, however, the patient may experience muscle weakness and/or ‘pins and needles’. Such is the state-of-being for many of the children experiencing recovery in Autism Spectrum Disorder.